Sunday, February 28, 2016

The GCW Tour, Sydney & New Zealand: A Split Shift

In my last conversation with the palliative nurse, she mentioned that they tried to help cancer patients come to grips with the fact that they can only really do one thing a day. I know exactly what she means. 

This morning I got up and got started bright and early. And after two hours had to return to my hotel to take a nap. Not a stellar performance by any means. I didn't even get very far. Turns out there's a weekend market right down the hill from my hotel, so I wandered around to see what was on offer.

I'm pleased to report that street markets are pretty much universal. Soaps, ceramics, organic foods. It's pretty much the same wherever you go. 

But while I was walking the market I came across the store front for (one of) the Sydney Ghost Tour(s). I love ghost tours. They're always goofy and fun, and typically give you a pretty good sense of the history of a place. Here's where the first mortuary was. Here's where the first gallows was. Here's where Fred hacked up Barney into little pieces. Fun stuff.

So I spent the afternoon sleeping and reading so I'd have the energy for the tour. Good thing I did. As our guide said at the outset, the two most important words he'd say would be "follow me" and when he said them he was off like a shot. 

Oh yeah. While the picture I took sucked, the tour did pass directly by the "longest running Irish pub in Sydney." Of course it did.

Anyway, the Ghost Tour was basically the end to my visit to Sydney. Sib2 and the sister-in-law will be arriving shortly. We've got a couple of hours here, but then it's off the airport and Wellington, New Zealand. 

It may be a day or two before I have a chance to post again.

Saturday, February 27, 2016

The GCW Tour, Sydney & New Zealand: Dave Visits Wendy's Secret Garden

While on top of the bridge, I asked the guide about the houses lining the shore across from the Opera House and downtown. Turns out, it's not Sydney's most expensive real estate --  "all real estate in Sydney" is expensive. Still, once I'd slept off my bridge climb and alcoholic strawberries, I decided to cross back over the bridge to see what that side had to offer. 

It was quite lovely. I made friends with a cat and found a statue of a dog. I decided that if you have to paint signs on your crosswalk telling pedestrians which way to look your traffic is probably running in the wrong direction, I found Wendy's Secret Garden, which would've been my Mum's favorite spot on the city -- Google it; it's a nice story -- and a wandered past Luna Park. 

Fun afternoon. Here are a few photos...

The GCW Tour, Sydney & New Zealand: Something Alcoholic with Strawberries in It

The bridge climb takes about three and a half hours, so when it was over it was time for lunch. Conveniently located across the street was this rooftop bar:

Now, the way things work in Sydney (like most English-based bar cultures, at least those I've been to) is that you first claim a table then go to the bar to order your food and drinks and pay for them. You take your drinks back with you and someone later delivers the food. 

Easy in principle; less easy when you don't know the culture, they don't really have a menu, the place is packed with people talking and ordering, and there's music playing. So somehow, when I went to the bar and asked for a sandwich (I did find a food menu), a glass of water, and "something alcoholic with strawberries in it" (since they had a big pitcher of strawberries on the bar), this is what I got:

The bartender at least looked a little shocked when I told him I only needed one glass. I didn't bother to try to figure out how I lead him to believe I needed a pitcher of booze given what I'd ordered.

I will say, though, it was tasty. I have no idea what was in it -- aside from strawberries and limes -- but it was a very nice summer drink which would've been great to share with a few other people. At least it was only a block to my hotel so I could take an afternoon nap. Between the bridge climb and the alcohol, it was sort of necessary.

The GCW Tour, Sydney & New Zealand: The Iron Lung

I spent most of yesterday on top of, inside of, underneath and on the Sydney Harbor Bridge. It quite the thing. One of the things I learned about it was at the time it was being constructed a number of people started calling it the "Iron Lung," as it was built during the depression and the jobs it created were credited with keeping the Australian economy afloat. (Given America's mediocre economy and crumbling infrastructure, one wishes our politicians had any sense of history -- at all. Anyway...)

The day started with the bridge climb, which comes with it an obligation not to take any pictures. Actually, they basically make you (in privacy) strip down to your underwear, climb into a jumpsuit, and then they clip everything to you. You aren't allowed so much a a kleenex to take with you. (They give you a handkerchief that clips to your sleeve.) In talking with our guide, the driver in all of this is less climber safety than driver safety. They're obsessed with making sure nothing happens -- from falling items to flamboyant outfits -- to distract the drivers crossing the bridge.

And so you get this...

That's obviously not me, but earlier in the day someone else could've taken a similar picture with me in it. The guide does take your picture at a few stops along the way, which you can purchase for way more money than my red, sweaty, puffy face is worth. Oh, and you get a free group shot -- and certificate of completion -- with the ticket price. Here's my group:

Sadly, the picture on my certificate isn't actually of my group -- a bit of miscommunication it seems -- so the world will have to take my word for it that I made it to the top.

If you're ever in Sydney and have a nice day, the trip's worth doing. A bit pricey, but the walking's easy (even three days past chemo) and the views are amazing. Of course, you can also just climb the stairs to the museum in one of the pylons. Also informative (if less so), and also nice views (if less so).

And here are a few more pictures of the bridge from some other vantage points.

Friday, February 26, 2016

The GCW Tour, Sydney & New Zealand: First Day in Sydney

Although I spent most of the day sleeping, I did get out for a few -- actually, two -- hours this evening. Sadly, two hours of walking is about all I can do before I need to lie down again. I'm starting to wonder how many more of these trips I've got in me. At some point, the I'm just not going to have the energy to make them worthwhile. 

But that's a problem for the future. Here's a few pictures from my neighborhood...

My hotel. My window's the fourth one back.

The Harbor Bridge. The flags are where you can sign up to climb along
the top of it which, depending on how I feel, I may do tomorrow.

The Opera House. Barber of Seville is the current show.
If tickets are available and aren't outrageous, I may go. 

Seattle once had a Luna Park. Sydney's is nicer.

There's a lot going on at the Opera House at night.

The GCW Tour, Sydney & New Zealand: Seven, or, Is It Still an Accomplishment If You Didn't Really Have to Work for It?

So after a day spent mostly sleeping, lamenting the loss of my relatively new prescription sunglasses (which went into my bag in Seattle but were not in my bag in Sydney), and wandering between the Sydney Opera House and the Harbor Bridge, I'm back in my very funky hotel.

A word to the wise: when renting a room above a pub, do not expect quiet -- especially if it's eighty degrees out, so everyone's on the sidewalk and all the windows are open.

Ah well. Given my need for sleep these days, I doubt the revelers will keep me up.

Anyway, I wanted to take this opportunity to conduct a brief year in review:

Last March, I was in Vietnam, which is in ASIA.
In June, the niece and I went to Spain, which is in EUROPE.
We also took a quick jaunt to Morocco, which is in AFRICA.
In August, my foodie friends and I went to Napa, which is in NORTH AMERICA.
November took me to Argentina, which is in SOUTH AMERICA.
And, of course, I went to Argentina so I could catch the cruise to Antartica which is in, well, ANTARCTICA.
Now it's February and I'm sitting here in Sydney, which is in Australia and OCEANIA.

So in the span of a single year, while working a full(ish) time job and being treated for cancer, I managed to step foot on all seven continents. I'm strangely pleased about this. 

Admittedly, it's sort of a stupid thing to list among one's "accomplishments," in that achieving it really only required three things: desire,  money, and an accommodating boss (thanks boss!). There are a lot of things that a lot of people do on a daily basis that actually takes way more work than going on a few trips. Say, for example, running a 5K,or learning a new language, or how to play a musical instrument. 

In short, there are way more things that require way more dedication and effort than throwing a dart at a map.

But I'm not going to be running any 5Ks (I'll be walking the Mercer Island Half), and I don't see taking up the piano or Swahili anytime soon. 

So instead I'm going to be satisfied with the knowledge that I've done something that, easy as it is (for someone with a good employer and first world resources), very few people have actually done. 

Antarctica tourism didn't really start until the early 90s, and current estimates are that about 40,000 people a year make the trip. Forty thousand times 25 is basically a million people. We should add a few score thousand for all the scientists and military personnel that have been to Antarctica, and then drop a few score thousand for all the Antarctica tourists who still have a continent or two to go. Let's just call it a million. A million people out of the 7.125 billion currently estimated to populate the planet plus the 1.4 billion that have died over the last 25 years.

That seems a pretty rare group. Not "people who have been President" rare or "people who have seen the Loch Ness Monster" rare, but still, rare enough that I'm going to consider it an accomplishment.

We all need our thing, I guess. So yay me. 

Tuesday, February 23, 2016

P.S. There's Still Time to Join Dave and the GCW Minions for the Mercer Island Half

Details on the Run/Walk with Dave and the GCW Minions page to the right. The more the merrier...

Now I'm Off to the Other Side of the World

Postings will now cease while I once again drag myself through the ordeal that is post-9/11 air travel and make my way to Sydney. It'll likely be a couple of days before I'm in a position to provide any updates. 

Yeah, yeah. I know. First world problems...

The Essential Tool for Managing Cancer

Aside from the fact that I really (really, really) dislike starting Chemo Thursday -- well, Tuesday in this case -- in the afternoon, today was actually pretty non-eventful as far as these things go. 

It was confirmed by my oncologist that every too months is actually too frequent for scans, but since that's what the protocol I'm on calls for it is what it is. In any event, there was exactly no change -- literally, no difference at all -- between this scan and the last. Of course in a cancerland, no change is considered a good thing, so I guess we can call that a win. 

The tumor markers were at 11-something, down a bit from the 14-something they were at last time, but in the realm of the 11-something they were the time before that. As my oncologist put it, it seems my markers "fluctuate" regardless of what's going on with the tumors so eleven's as good as anything.

The oncologist was less convinced than the palliative nurse and the PA that the dex was causing my post-infusion insomnia, but he was willing to go along with cancelling it provided I was okay with the increased risk of nausea. As much as I hate vomiting, at this point sleep is more important to me so we took the risk -- and I got a prescription for Ambien so at least I've got that option at hand. 

And as soon as the flight to Sydney is wheels up, I'll be trying it out. With any luck, I won't be one of those who reacts with sleepwalking as that could be embarrassing on an airplane full of people. 

So that was the boring stuff. The interesting stuff came at the end of the appointment. I mentioned the upcoming expiration of my short-term disability and the likely need for some sort of medical attestation to my current life expectancy, and my oncologist had an interesting, if easily anticipated, response. He said, "I can't say anything about your life expectancy, I can only speak to the medians." 

As the conversation continued, he made one more interesting comment. He warned me not to spend all my money. He said he'd had patients, as had other oncologists he knew, quit their jobs and spend all their money expecting the cancer to kill them only to survive. He didn't want me coming back complaining that he told me the cancer would kill me if it didn't. 

All of which brings us, yet again, to the most essential tool necessary for coping with cancer: an understanding of the bell curve -- i.e., this...

At it's core, everything that happens to you during cancer is going to be driven by a bell curve. 

When I mentioned our conversation to one of the sibs, they got all excited wondering what prompted my oncologist's new optimism. I had to explain that it wasn't optimism. He was simply reminding me that cancer's all about the bell curve. The likeliest outcome is that big hump in the middle, but there's always the chance -- slim though it may be -- that you're individual experience will land at one of the tails. 

Happily, we know I'm not at the left had tail (which is made up of all the people who don't make it through their first year). And there's certainly the possibility that I'll wind up somewhere towards the right hand tail with all my fight club colleagues who've survived for five or even ten-plus years post diagnosis. 

But the question is, how are you going to play the game? Knowing that your individual outcome is going to land somewhere on that bell curve, with the likelihood of any given outcome defined by the curve, are you going to swing for the fences or play the odds and plan on something in the middle of the hump?

Me, I'm playing for the hump. I get what my oncologist was saying, but I'll take the risk that I wind up spending all my money and yet surviving. I'm a realist, and the odds of that happening are actually pretty slim. 

It's all about the bell curve -- or, as I wrote awhile back, anecdotes are great, but statistics run the world. 

This Is What Happens When You Get a Reputation

Apparently, word has gotten out that I find the minions entertaining. As a result, I keep acquiring minion paraphernalia from a variety of unexpected sources. Yesterday, I caught a friend at work as she was leaving a minion on my desk. Seems her children found it more creepy than soothing.

It could be the chemo, but I think it's hysterical. But you can decide for yourself (be sure the volume's up on your computer)...

Monday, February 22, 2016

Speaking of Heads

At risk of repeating myself, can I just mention (again?) how much I dislike psychosomatic chemotherapy symptoms? Today is as far as I ever get from chemo infusions and pills, yet by noon I was already starting to feel all of the crap that I'll be feeling for "real" tomorrow when my infusions are finished. 

What evolutionary advantage could there possibly be to feeling crappy in response to an experience that hasn't happened yet? Prompted by the psychosomatic symptoms I could refuse the actual chemotherapy treatment, but that hardly seems a strategic choice if one's goal is to survive. 

And it seems to me that it really ought to be the case that once you realize that the symptoms are psychosomatic that should be enough to effectively turn them off. I mean, if you know it's all in your head, shouldn't reality adjust around that awareness?

Apparently not, because I've felt like crap pretty much all day and there's absolutely no reason for it other than anticipation over how the chemo will make me feel, and it's bad enough to have to feel that way in response to the drugs but to feel that way just because your brain seems to want to is annoying as hell.

If I've got to have an imaginary friend, why couldn't I get the six foot tall invisible rabbit instead of the twenty-four hours of imaginary chemo effects? 

Sunday, February 21, 2016

A Big Week Ahead

This is going to be an exciting week. "Exciting," in this case, meaning something like "falling on the spectrum from really horrible to really fun and interesting, and probably bouncing back and forth between the two or possibly both at the same time."

There's just not a good word for that in English. Here's the deal...

Tomorrow I go to work and then duck out for a couple of hours at lunch to get scanned. Now, no one expects the scan to actually reveal much of anything, but because I'm in the control group on this clinical trial I have to get scanned at least every two months (which is already more frequent than is standard) and then because I'm going to be in New Zealand when the two month time point actually hits, they're bringing me in early. Ah well, at least it's not an MRI.

The good news is that at my last scan I learned that I can actually opt out of the post-scan monitoring period, so I should be out the door half an hour earlier the usual. Of course, my last scan was a clown show of overlooked scheduling updates and misbehaving chest ports, so I'm trying to temper my expectations for how fast -- or slow -- this is going to go.

Then on Tuesday I get to go to work for the morning, and then again duck out at lunch -- this time for the conversation with my oncologist that will tell me what the scan found to be followed by the next round of infusions. Good news: no dex this time, so maybe I'll be able to sleep. Bad news: my infusion isn't scheduled to take place until like 3:30 in the afternoon, which means I'm going to be there much later than I like to be. It'll be a miracle if I'm home by 8:00. There must've been a rush on infusion slots, as normally I proceed from appointment to appointment, but this time there's a huge gap between when I'm done with the oncologist and when I get to start in on the infusion. Price I pay for going on a strange day, I guess. 

Then there's the joker in the deck: on Wednesday at 6:00 pm I get on a plane for Los Angeles. That's a three hour flight. Then there's a ninety minute layover, and then the fifteen hour flight to Sydney. So hours 24-44 post-chemotherapy I'll be spending on a plane. I've done it before, but not this deep into the series, so I'm a tiny bit worried. But with a bag full of sleeping pills, anti-nausea meds, and Imodium, how bad can it be? (Yeah, I agree. Pretty bad.)

But I do have one ray of hope: Qantas sent me an email last week asking how much I'd be willing to pay to move up to business class. Seems they try to sell all the seats they can, but then take bids for the rest. If your bid wins, you get the upgrade for what you offered. I'm too cheap to pay the going rate ($4K) for the upgrade, but I'd pay a portion of it. So we'll see. And on the offhand change the airline has left a seat or two to the gate folks' discretion, I'll probably see if any of them are feeling sympathetic. If nothing else, the cancer card is usually good enough to at least get on the plane with early boarding. 

And then I'll be in Sydney -- or, as Sib2 describes it, the San Diego of the South Pacific. The good news is I have three days in the city to both recover from chemo and do at least some sightseeing before Sib2 and his wife show up and we head to New Zealand. 

So, yeah, busy week ahead. 

Saturday, February 20, 2016

Every Time You Think They've Hit Bottom, the Drug Companies Surprise You and Descend Even Deeper

If you watch television, like ever, you've no doubt seen the various "direct to patient" ads from drug companies hawking their drugs "designed" to treat what generally strike me, with apologies to all the "restless leg" sufferers out there, as mostly made up conditions.* 

Today, however, I saw what struck me as a new low in direct to patient marketing: Opdivo, Bristol Myers Squibb's new "treatment" for lung cancer. The commercial markets this as an alternative to other treatments for a very specific lung cancer, and shows lots of smiling, healthy looking people, but here's what it doesn't say:

The only patients eligible to take Opdivo are those with the specific form of cancer being targeted who have exhausted all other forms of cancer treatment.

Opdivo not intended to cure lung cancer, but to keep patients for whom treatment has failed alive longer -- i.e., to slow the final progression of the disease. Under trials, the drug extended the life expectancy for terminal patients ninety days. (Not stated in those results were what those additional ninety days were like, but despite the commercial, I'm guessing they didn't involve a lot of softball games.) 

The cost of treatment with Opdivo is $150,000 for the initial treatment, and then $14,000 a month for as long as treatment continues (which, likely as not, won't  be very long). 

Not surprisingly, a lot of medical insurance companies -- including the British Government -- are balking at the cost. 

But it's just so great that Bristol Myers Squibb decided to get a bunch of dying peoples' hopes up with lots of happy images and ambiguous promises broadcast over network television. 

Fucking ghouls. 

* Despite what you might think, as a general rule drug development isn't really about seeking solutions to problems. Rather, it's about seeking problems for solutions. This is to say, a drug is discovered that counteracts A, B and C, and then the company goes searching for all the situations in which A, B and C can be defined as problems. 

Wednesday, February 17, 2016

116 Days

It would seem that one hundred and sixteen days is how long it takes to socialize a cat. Well, my cat anyway. This morning as I was putting my shoes on for work, she jumped up in the chair beside me and crawled into my lap. Affectionate, if somewhat inconvenient, in that I was late.

And then tonight when Sib2 and I came in after going out to dinner, rather than running under the bed Kevin ran into the living room and sat at the foot of the couch, patiently waiting for Sib2 to sit down and continue petting her.

And of late, here's how Kevin generally prefers to sit:

That would be my arm in the gray that she's holding down.

So we've gone from unwilling to come out from under the bed to starved for attention in a hundred and sixteen days. I guess it's a good thing I didn't return her before the ninety day window closed. 

An Oddly Cheery Conversation about Death (and a Few Other Things)

Yesterday I had my first conversation with one of the nurse practitioners in the Palliative Care office at the SCCA. It was a hoot (if in a surreal sort of way).

I might be unique in this regard (though I doubt it) but one of the primary challenges of cancer I’ve found is that pretty much every conversation becomes this oddly complex dance. You’ve got what can be a very emotionally charged situation, with an extraordinarily wide range of possible responses, and so the two parties communicating are each trying to guess where the other person is at and then structure their messages in light of that assumed positioning. It’s this dance that leads to situations like my initial diagnosis, where it took eight days and conversations with literally scores of healthcare providers before anyone actually used the word “cancer.” Even now, my conversations with my providers -- nevermind friends and family -- all tend to be conducted in a sort of weird code which puts a maximum emphasis on uncertainty.

It would seem, however, that palliative care nurses don’t do uncertainty, and they don’t dance. The woman I saw was about as straight a shooter as I’ve come across in two years of cancer treatment. She wasn’t morbid or depressing, but she was more than willing to talk about dying in whatever capacity I desired. 

It was great. 

We talked about medical directives. I learned that the SCCA is actually set up to store a copy of the patient's medical record in their system, so if/when anything goes wrong their set up to know how to react in accordance with the patient's desires. Two years into treatment and this was the first I've heard of that.

We also talked about what they do when diabetics hit their final days. I knew from my Mum's passing that one of the signals that a person is...

Stop. Wait. So here's an example of the dance. I could write "getting close to dying" here, but many people would find that depressing or upsetting. Some -- ahem, Sib4 -- might actually mention it to me, but many others would just be sad. I don't want people to be sad, so perhaps something like "nearing the end" or "reaching their final days," but that just seems overly euphemistic and kinda stupid. So what's a person to do besides hem and haw and stare at their feet? You see the problem.

So anyway, insert your own preferred euphemism -- or not -- for dying here. And now back to diabetics. that they stop eating or drinking. The body's just not interested anymore. Fair enough, but my question was what they do with a diabetic, who's typically taking insulin to offset the carbs in their food when suddenly that person refuses to eat. Obvious answer: they stop giving them insulin before that point arrives. As my nurse so wonderfully put it, the only reason to try to manage diabetes is to avoid the long-term complications that come from out of control diabetes. Once someone no longer has a viable long-term, there's no reason to keep trying to manage it. 

I love that answer. It's so rare to see common sense in action.

Of course, we didn't only talk about dying. I wanted to talk about dying, but the nurse wanted to talk about all the other things the palliative care group can do for me. And I'm glad we did. 

For example, I mentioned in passing that the infusions have been resulting in two days of insomnia. Nurse's response: "It's the dex." Unlike GHC, which always seemed to prioritize my diabetes treatment over the cancer treatment and so wouldn't give me dexamethasone, a steroidal anti-nausea medication that can cause high blood sugars, SCCA always gives me the dex. Apparently, aside from high blood sugar, dex also causes insomnia. And since my reaction to chemo has never really included nausea, it seems kinda pointless to give me an anti-nausea medication that's going to keep me from sleeping for two days. So my new nurse talked to my PA and got them to remove the dex from my treatment plan. 

So I'm already liking palliative care, but it gets even better.

In the time I've been seen at SCCA, I've been to Vietnam, Spain, Morocco, Hungary, Argentina, Antarctica, and probably a couple of other places I'm forgetting at the moment. I've also had conversations with my oncologist about how my travels, and the interruptions in the treatment cycles they occasionally cause, were potentially having a negative impact on a) his ability to figure out the best treatment plan, and b) my response to the treatment. But nowhere in any of that did anyone mention the fact that the SCCA can arrange for patients to get chemo infusions in clinics in other countries. This, however, was the first thing out of my palliative nurse's mouth when the subject of travel came up. She hears me say New Zealand and immediately responds, "you know we can arrange for you to get your infusions remotely if that would help, right? A few weeks ago I helped get a patient set-up to get their treatment in Iceland." 

So I'm thinking a) I want to get chemo in Iceland just so I can say I've done it, and b) why has it taken two years for anyone to mention this? Granted, there will likely be a cost associated as the fact that SCCA can arrange it doesn't mean my insurance will necessarily pay for it, but still, the option to be able to go away and not have to worry about coming back every three weeks to get poisoned certainly has appeal. 

Long story short: if you find yourself with a terminal disease, don't wait until you're on death's door to talk to the palliative care people. Given the opportunity to start this all over, my first stop would be the palliative care office.

Monday, February 15, 2016

That Is a Big Number

Having nothing better to do with my rainy, disgusting President's Day, I decided to process eighteen months worth of mail. This meant balancing my checkbook, eyeballing all my credit card statements to make sure nothing particularly weird jumped out, and reviewing the last year's worth of EOBs from the SCCA and UW Medicine.

Any guesses what twenty months of cancer treatment costs? In my case (assuming the nine rounds of chemo at GHC cost at least $20K, which seems an extremely safe bet), somewhere just north of half a million dollars. 

Half a million.


A million. Times point five. Five hundred thousand. 

That is two hundred and fifty times what my first car cost, and more than three times what my first house cost. 

Half a million dollars?!?! 

When I was a kid I was a regular viewer of the Six Million Dollar Man, and no doubt wished I could be the six million dollar man. I probably won't make it quite that far, but even if I do, this is definitely not what I had in mind. 

Sunday, February 14, 2016

I'm Ready for My Superpower Now

Last night the brother-in-law, the nephews and I went to see Deadpool. It was an entertaining enough movie for what it was (if containing a few moments where one thinks to oneself that watching it with a fourteen-year-old may not have been the best of choices). Watching it as a non-expert in all things Deadpool, all I could think was that whoever wrote it must have had a testier relationship to cancer than I do.*

In the movie, the main character gets cancer -- well, cancers: liver, brain, lung and prostate. He then meets a sketchy guy in a bar who offers to both cure his cancer and give him superpowers. Naturally, our guy opts for the treatment which turns out to be, quite literally, torture. 

So he gets cancer (check), goes through torture (check), and winds up with superpowers (uh...). Up to the superpowers part, it sounds a lot like your basic cancer treatment.

So I'd really like to have my superpowers now. It doesn't have to be immortality or ninja fighting skills. I'd settle for, say, the ability to stand still for more than ten minutes running. 

Or eyes that shoot laser beams. Laser beams would be cool... 

* Actually, the bits in the movie when the character is dealing with cancer are pretty apt. 

Thursday, February 11, 2016

Sort of a Strange Day

In the movies, this would be the scene where the poor schmo hears the rumbling before the avalanche carries him away...

This morning started with a call to the SCCA to schedule my first appointment with palliative care. After a conversation with one of my fellow fight club members last night, I decided it was time. The sales pitch for palliative care focuses on help with the pain and stress of treatment, but it's the part they barely even mention -- the assistance they can provide after treatment fails or is terminated for some other reason -- that I'm actually most interested in. I don't want to be like my neighbor, who was dropped into the hands of a completely new end-of-life provider network three weeks before he died. I want to be like those chess players who know how the game's going to end almost before it starts.

But that doesn't mean it wasn't a weird call to make.

Three hours later I was getting a debrief from my HR colleague on the eleven-dimensional chess that will define my next move. Despite the weirdness, it was actually a pretty great conversation. She did a nice job outlining my options, and now that I've seen the numbers it's really not that difficult a choice. Plus -- plus, plus, plus -- it turns out the official numbers on my short term disability are substantially different than my estimates were, so I've got more time than I thought to figure it all out. But I gotta say, when everything you've seen and read for as long as you can remember seeing and reading tells you that you've got a good twenty years left in your working life, it's a little disorienting to look at a piece of paper that tells you it's probably closer to twenty weeks. 

Oh yeah, the other weird thing: I love it when people say things to me like, "you need to consult with your tax adviser..." Tax adviser? I plug my numbers into TurboTax every year, and pay what it tells me to pay. I don't have a tax adviser. I suppose now I'll need to find one. 

Finally, a few hours after my HR consult, I had another meeting with a rep from corporate headquarters. This one was to talk about succession planning. My employer's been on a multi-year project to make sure the management layers in the food chain have plans in place to make sure the organization continues spinning along if/when a manager decides to leave the organization. They've finally made their way down to my level. It was actually kind of a fun conversation, but I suspect most of the interviews don't start with the interviewee (e.g., me) saying, "It's funny you should ask..."

It occurred to me on the way home that the only thing that would've made today even more absurd would've been if I'd chosen today to call the funeral home in my neighborhood to make plans to have my body collected when the time comes. For some odd reason, despite the fact that I'm actually sort of looking forward to the conversation,* that's a call I just haven't been able to bring myself to make. 

But the strangest part was going from having conversations about, well, getting ready to die to having conversations about what needs to happen at work tomorrow or next week. It was a little bit jarring, to say the least.

* You read stories about how funeral homes push grieving families to spring for all the upgrades when they're purchasing mortuary services. I'm wondering if they'll take the same approach in my situation, and am sort of hoping they do. I picture something like this:

Me: I want you to pick up my body, put it in the cheapest box you've got, cremate it, put the ashes in a Ziploc and give them to my siblings.
Mortuary: But don't you want a nice casket? Mahogany? Silk linings? Brass fittings?
Me: I want you to pick up my body, put it in the cheapest box you've got, cremate it, put the ashes in a Ziploc and give them to my siblings.
Mortuary: But what about a viewing? Don't you want a viewing?
Me: I want you to pick up my body, put it in the cheapest box you've got, cremate it, put the ashes in a Ziploc and give them to my siblings.

Mortuary: How 'bout an urn? Silver? Brass?
Me: I want you to pick up my body, put it in the cheapest box you've got, cremate it, put the ashes in a Ziploc and give them to my siblings.

It would be kind of fun to see how many times I have to repeat myself before they give up. But I'll save that until the need's a bit closer. 


I made another chart. This one's for colon cancer:

Oddly, this shows the median survival rate to be eighteen months, not the thirty I was told when I was diagnosed. Lies, damn lies, and statistics, I guess, but I wonder who got tossed out of this pool to take the median figure to thirty months. Then again, it probably doesn't really matter.

And since I'm now in that light blue group somewhere, it's seems somewhat more likely -- okay, it's 54 to 46, but that's not terrible -- that I'll at least make it to December. Unfortunately, while I'd like to say this fills me with confidence, that's not where my brain's currently at (hence the long series of vaguely morbid, and not so vaguely aggravated, posts). 

I thought of all this as I was thinking more about who we hear from when it comes to cancer: it's the snowflakes -- the lucky folks who make it to the upper left corner of the graph and then start extrapolating from their experience, making it seem like they're the rule, rather than the exception. Seven percent of stage IV colon cancer patients make it to five years. Seven percent! That's the kind of number that typically comes with an "only" or a "just" in front of it, not an "as many as." 

I wish there was a way to hear from the purple folks, or the dark blue, to sort of balance out the picture. Maybe it's just me, but I'd like to know what some of them thought of cancer, and cancer treatment. 

But they aren't around to tell me, which is the nature of being purple or dark blue. 

Tuesday, February 9, 2016

In Retrospect, I Think I Chose Poorly

The last twenty-four hours or so have generated some interesting philosophical interactions. I was skipping channels last night and came across Kung Fu Panda. It was the bit where the turtle says to the rat (now there's a sentence you don't see everyday), "There is a saying: yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the present."

Then today I had a brief conversation with a friend who's going through a rough time. She described it as her "midlife crisis," but that's just a fancy name for the (not so joyous) experience of reevaluating our choices that most of us do from time to time. 

And then tonight Sib2 came over and somehow the subject of the Rickshaw Run came up. I won't say much about it here -- yet -- but do go to if you're at all intrigued. (And if it's the kind of thing that you read about and think, I totally want to do that, let me know. I'm thinking the August version, and while I think I've got the people to fill a single rickshaw, I'd love to do the run as part of a larger group.) 

The end result of all of this is that I've yet again been reminded that I made some really crappy choices over the last 48 years. The world gets all in your face about security and retirement and marriage and mortgages and giant TVs and all that crap, and I collected it all, and have either already lost it or, by virtue of acquiring terminal cancer at a relatively young age, rendered it useless. In college, one of my roommates and I used to talk about sailing around the world. I'd trade every dollar in my retirement accounts for having actually given it a shot -- or even just seen more of the world by train or car or motorcycle or rickshaw. 

Which leads back to my ongoing problem of how to balance my desire to accomplish some of those things with the time I've got left against the debilitating effects of the chemotherapy that's, presumably, keeping me alive. Earlier this week I was thinking it might make sense to pull the plug on the chemo, buy an open ticket, and just hit the road for the remaining time I've got. But now I need to last until at least August so I can make the Rickshaw Run. And who knows what I'll find after that. 

I wish I'd spent the last twenty years doing some of those things already. It would make it a little bit easier to make choices about what to do with the time I've got left. 

Monday, February 8, 2016

A Quick Review of this Round -- and a Preview of the Next

I'm now five days past chemo, and am (more or less) back to normal. Well, cancer normal anyway. Thus, it seems an appropriate time to provide a quick, high-level rundown on how things went this time:

Thursday, 2:00 pm -- Chemo starts
Thursday, 5:00 pm -- Exhaustion starts
Thursday, 5:30 pm -- Gastrointestinal distress starts (then repeats on about a 2 hour frequency)
Thursday, 6:30 pm -- Leave the SCCA
Thursday, 9:00 pm -- First attempt to go to bed
Friday, 1:00 am -- Completely give up on sleep
Friday, 7:00 am -- Make another attempt at sleep
Friday, 11:00 am -- Move from the bed to the chair
Friday, 1:00 pm -- Move back to the bed; continue the wandering migration from bed to couch to chair for the next 7 hours
Friday, 11:00 pm -- Take trazodone, go to bed
Saturday, 2:00 am -- Learn that gastrointestinal distress trumps trazodone
Saturday, 5:00 am -- Try the couch again
Saturday, 6:00 am -- Or maybe the bed
Saturday, 1:00 pm -- Hey, I must've fallen asleep. Finally!
Saturday, 4:30 pm -- Meet a friend for a drink and snack so as to force a need to leave the house
Saturday, 6:00 pm -- Bed, chair, couch for the next eighteen hours; somewhere in there sleep happens
Sunday, 3:00 pm -- Go to Sib2's house to watch the Superbowl
Sunday, 9:00 pm -- Come home, do not much of anything
Sunday, 11:00 pm -- Go to bed
Monday, 6:30 am -- Get up and go to work

In short, it was a slog. Exhausted, miserable, unable to sleep, uninterested in eating, frequent hellish trips to the bathroom. Five days in and I'm still reeling, but I could at least approximate a normal day's activity. 

But here's where it gets interesting. Today the SCCA sent me the schedule for the next round. I knew it was going to have to be close to my departure for Sydney, but seeing it in writing makes me wonder how carefully I thought this through. 

Those three asterisks up there? At roughly that point in the next cycle I'll be getting on my first plane for Los Angeles. And the three crosses? That's when I get off the plane in Sydney. Basically, I will be spending hour 24 to hour 48 of chemo on a plane. 


In some ways, it's not really my fault. With a chemo cycle of every three weeks there's not a lot of room for travel if you're not willing to bump right up against an infusion at one end or the other -- or, in all likelihood, both. But by the same token, my frugal decision not to upgrade to business class at least for the trip down probably wasn't the wisest move in the world. It was expensive as hell, which is why I didn't do it, but it likely would've been money well spent. 

To say the least, it's going to be an interesting trip. Assuming, of course, I get through the next two and a half weeks.